Dear Thelma: Who will take care of my spastic son when I am gone?


By THELMA
Do you need a listening ear? Thelma is here to help. Email lifestyle@thestar.com.my.

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Dear Thelma,

My heart is very heavy and my mind is filled with concern for the future. I am a 65-year-old mother to a beloved son, who is 30 years old.

I am deeply worried about what will happen to my son when I am no longer around to care for him.You see, my son has spasticity, and caring for him has been the centre of my life since he was born. He is my only child, born from my first marriage, which unfortunately ended with the passing of my husband. I have since remarried, but my current husband and I have no other children together.

As I am growing older, I find myself increasingly concerned about what will happen to my son when I am no longer here to look after him. While my husband loves my son dearly, he is not his biological father, and I worry about whether he will be able to provide the same level of care and support that I have given throughout the years.

I have tried to plan for the future as best as I can, setting up savings and making arrangements for my son's care, but the thought of him being alone and vulnerable after I am gone keeps me awake at night. I worry about who will understand his needs, who will advocate for him, and who will love him unconditionally as I do.

I feel a tremendous weight on my shoulders, knowing that I am responsible for the well-being of my son, but also recognising my own limitations as I age. How can I ensure that my son will be taken care of and supported when I am no longer able to do so myself?

Sleepless

I’m so sorry to hear of your situation, it’s such a challenge. As readers may not be familiar with it, I will first discuss standard approaches for care before answering your question.

Spasticity is typically caused by damage to the spinal cord and brain that control muscle and stretch reflexes. It affects muscles and joints. While there are varying treatments, sufferers typically need lifelong support.

So, like parents of kids with cerebral palsy, Down’s syndrome and other lifelong issues, long-term plans must be made. As each person will have different abilities, needs and circumstances, arrangements differ widely.

If the person finds it hard to make financial decisions, there is usually a trust, a special tax-efficient setup where a trustee or group of trustees manages the money in order to meet the changing needs of the disabled person.

The day-to-day care is trickier. One of the common methods is to set up a circle of support. This is where a group of friends and family identify what they will do to help. Like cousin X drops by to watch the football on Saturdays and uncle B advocates with the physiotherapist every month.

Sometimes this circle includes part-time professional help from social workers, physiotherapists, doctors, mental health professionals and more. If you’re lucky, you might be able to afford full-time home care or a form of assisted living.

So this is where we come to discuss your question: You have devoted your life to caring for your son, and you are concerned what will happen once you are gone. I think the most rational step forward is for you to test the systems you have set in place, so you are sure they work.

At 65, you are in the prime of your senior years. While you are fully able, go over all the plans. Then, talk to everyone involved and reconfirm they’re all on board. When that’s done, go away for a few days.

During your time away, make certain that your son and the others don’t contact you. It’s a live test that will tell you what works and what needs tweaking.

Over the next six months, plan to be away once every fortnight. Keep tweaking until you know that it’s all working well.

For you, this may be taxing because watching everyone struggle may tempt you to jump in and save them all. Don’t.

It has taken you 30 years to learn your skills, so don’t expect miracles. Everyone is on a learning curve, including your son. It’s going to be choppy and that’s OK.

The point is this: While you are here, you are the expert. Other people don’t really know what it takes. These dry runs are best done right now. When things aren’t perfect, you can teach or support.

Also, practice periods will help your son become accustomed to having different people to reach out to. This is very important. Putting in the effort to establish those ties now means you can avoid the shock and impact that comes from sudden and complete change.

As for your husband, you love him, he loves your son, and that is what matters. Let him share the care. Lean on him. It’s what partners do for each other.

Finally, reach out to organisations such as the Cerebral Palsy (Spastic) Children’s Association of Penang (tel: 04-657 0160) and the National Council Of Spastic Children's Association In Malaysia (tel: 03–7958 2393).

Sharing with others will give you some relief – and maybe help provide some solid specialist advice too.

I hope this helps you move forward to gain the peace and assurance that you need. Please know I am thinking of you.

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